According to the CDC, 1 in 88 children in the US have been identified with autism spectrum disorder. These numbers come from 2000 and 2008 (i.e., they’re already old in comparison to some more recent studies using different, more timely methodologies in other locations), and are compared with the 1 in 110 that dates from 1998. While none of the prevalence estimates I’ve seen have lined up exactly, this trend towards more people with autism (versus less people with autism) seems consistent.

To my knowledge, there’s no one way to account for the increase. Increased awareness and assessment is certainly part of it. Parents are able, without as much difficulty, to persevere until they get a diagnosis, which wasn’t always the case. How much awareness and access to diagnostic assessment impacts these numbers is beyond my skill to deduce, but I doubt it can account for all of it.

Theories to account for this increase have included environmental and other man-made variables, such as vaccine poisoning. Vaccine theories don’t hold up with the continued increase, however, which suggests a combination of environmental and genetic causes.

In the past, I’ve made it clear (or tried to) that I’m not overly interested in the causes of autism. This doesn’t change that. Whatever the cause or causes, my children are who they are, and they deserve to be treated as human beings, and they deserve to be accommodated and accepted as who they are right now.

They are not broken. They don’t need to be fixed and they certainly don’t deserve to be devalued because they don’t measure up to some misguided perception of normal or perfection. I know the research into causation will continue. I know that we will look for the environmental triggers and genetic factors that may align in such a way as to cause autism. However that manifests, we must not forget that 1 in 88 isn’t just a statistic. We’re talking about people.

There are people interested in causation and cure, but I am not one of them. I think, of the two, understanding the genetic causes is of more value than trying to manipulate that understanding into some form of cure. My children are valuable human beings just the way they are; they don’t need anyone full of their own self-importance or their own sense of superiority telling them they need to be different and forcing them to comply.

I agree that understanding the human brain, regardless of brain type, is of value. I think the risk is when external value judgments (this is the “right” way for a brain to function and that is a “wrong” way for the brain to function) come into play. Those value judgments have nothing to do with science and everything to do with prejudice and hubris.

“genetic research is not a waste from a purely basic science perspective”

No, it’s not, but the question is: How pure is that research? The thing about science, as a discipline, is that it’s completely amoral. Pure scientists study what is in the pursuit of understanding. They don’t make value judgments, as part of their science, about what should be.

In saying, I must be clear that amoral is different from unethical. Morality, in this sense, is about making value judgments like “One kind of person is better than another kind of person.” Ethics is about adhering to standards of behavior. It is my opinion that pure science should adhere to ethics that are mutually agreed upon between the scientists and the society. For example, a scientist can say they’re not going to corrupt their research to support a political interest. Whereas society can say they won’t support scientists creating human-animal hybrids for the sake of scientific research.

What I see happening in autism research is not amoral; it’s driven by the precept that autism is bad and needs to be fixed. I see that as a betrayal of trust. If the science were pure, then it would be about understanding the autistic brain or the autistic genome for the sake of understanding alone, not with the intent to change that brain or that genome to be more socially acceptable.

“However, I do wonder why you are “not overly interested” in the causes of autism.”

Frankly, because those causes do not matter. Not to me. Understanding the causes will not change my daily life. Understanding the causes will not change my future. Unless, of course, with cause comes cure and that cure is forced down people’s throats–which is the likely result of any cure that is discovered.

“I’m not familiar with your children, but my cousin is going through an aggressive phase, as do many children with autism, and I’d love to know what causes at least that portion and how to help fix it.”

Ah, see, that’s where our visions truly diverge. I don’t think your research will provide the answer to that. As long as we’ve been studying the human brain, do we know why people act agressively? Have we solved that? Do we know why, from a purely scientific standpoint, we go to war, commit murder, rape, pillage, and starve each other? If we can’t answer those questions, how are we going to pinpoint what part of the brain or what part of the genome triggers aggressive behavior?

Besides, a lot of that aggressive behavior–at least in my own children–is already explained, at least in a general sense. Frustration. Overstimulation. Understimulation. Anger with having needs unmet. The list could go on, but what we’re talking about are human emotions, human needs. Getting things down to the specifics that enable us to alleviate the need for aggression is much more difficult. But, in the larger sense, all those behaviors (all human behaviors) are a form of communication and self-expression. Autism or lack thereof really doesn’t change that. The thing that makes autism so different is that the people “listening” to those behaviors don’t think like the people expressing those behaviors, and so it can be difficult to understand.

“What makes some of these kids nonverbal? Wouldn’t it be nice if we could fix that?”

Sure, I’d love for Alex (my nonverbal child) to talk! But, at what cost? This world is full of people who would gladly erase everything that makes Alex (and other children like him) who he is in order to make him normal. I’m not willing to do that. I think it’s morally objectionable. I think the price is too high. I’d much, much rather have an Alex who can’t talk than a non-Alex who can.

See, the thing for me is this: The “cure” for Down’s Syndrome is abortion. That’s eugenics. Eugenics is not science. Eugenics is some pseudo-social science gone amok. The people leading the science brigade for the cure–Autism Speaks–uses the language of eugenics to communicate their message. They don’t care about Alex. They don’t care about any autistics–not the people themselves. All they care about is “fixing” them, based solely on their own hubris that because people with autism are different, they must be broken.

There are a lot of people in our lives, myself included, who are determined to do everything they can to empower my children to be all they can be with as little suffering as possible. If, over time and after significant testing to prove its safety, the medical community were to offer me a drug or treatment that would help Alex to talk or reduce his aggression or his sensory overload without fundamentally changing who he is–well, I’m all for that!

But, as far as I can see, that isn’t the goal of the cure-driven research. As far as I can see, that has never been the goal.

I can’t even begin to explain how much I appreciate your thoughtful response (you’d be surprised how often I ask these types of questions compared to how seldom I get a response). While I don’t agree with everything you’ve said (“with cause comes cure and that cure is forced down people’s throats” seems like a bit of an overstatement, for example), you have given me quite a bit to think about and, if you don’t mind, I’d love to continue the dialogue.

Re aggression:

You are absolutely correct that we understand a lot about frustration and stimulation relating to aggression issues and that much of what will help with that will be behavioral, though I think it can be informed by neuroscience and genetics. I guess what I really want to know is whether the brain and endocrine pathways that lead to an aggressive response are triggered by the same types of things and go through the same processes, in the same order, with the same timing in people with autism compared to their developmental peers. To my knowledge, no one has looked at this, and (as aggression is not my area of expertise) I’m not sure we’re at the point where we can do this effectively anyway, but with further research and by utilizing some of the newer imaging technologies (they get better every year) I think it’s something within our grasp.

I suspect you may disagree with me on this, but: if it turns out that people with autism have their aggression pathways triggered more quickly or more strongly, or have them triggered by neurochemicals or hormones that do not trigger aggression in most people, I would argue this is the type of thing where a targeted drug treatment (not a sedative, but something that actually specifically targets the point in the pathway that is being overstimulated) would be warranted – not to force on people, but to give them the option of using when they expect to enter into a situation where they (or, I suppose their parents, though I’m not thrilled with that answer) know they are very likely to become aggressive. As always, a good practice would be to do this in concert with behavioral intervention both on the part of the person with autism AND of those they are behaving aggressively towards. I know this is hypothetical, but it is similar to the practice of giving beta-blockers to someone with extreme anxiety that is debilitating in certain situations (eg: my colleague who takes them when she has to give an oral presentation). This brings me back to your point about us not knowing why humans rape, pillage and murder: you’re right, of course we don’t from a purely scientific standpoint, but we have some basic ideas, and the chemical underpinnings of the desire to harm another, especially in war-like fight-or-flight situations, are fairly well understood (though there is always more to learn). To go back to my analogy about beta-blockers – we don’t REALLY know why people develop phobias either, but we do understand the basic chemical pathways that cause debilitating fear and how to interrupt them. Giving beta-blockers to someone with debilitating fear does not devalue the person who has a brain type that reacts strongly to fear, nor does it tell society not to have empathy for those who do, it only gives them one more option for trying to overcome something that they find difficult and expand what they are comfortable doing.

You can probably see how I’d make a similar case for potentially helping people with autism to speak, though I’m not going to just now, as I think we know even less (and have competing theories) about why they don’t and I don’t want to write a book. Suffice it to say that I think aggression would probably be easier to tackle, though there may be scientists who know more about the topic who disagree. And, I’d guess that a lot of what you and I may disagree about stems from either a difference in our expectations of what science can achieve (and, to be honest, I may be being too optimistic, at least in the short-term), or a difference in scope in the amount of time we are willing to wait.

Re Eugenics:

Ok, I totally understand this argument, but I have a hard time with using Down Syndrome as an example, as the female body more often than not miscarries when a fetus is created with trisomy 21 and the main reason that there has been an increase in abortions of Down’s Syndrome children is that more women are having children older and the body is not having the miscarriage that it would have if the pregnancy had occurred 10 years earlier. I’m not sure quite what it is, but that situation seems inherently different from autism to me. That said, I am against anyone counseling a mother that she SHOULD have an abortion if her child has Down (largely because I agree with you that science should be what you’ve called “amoral”), though I’m not necessarily against the parents making that decision (insert personal religious/moral/political views here). Anyway, that was a bit of a tangent… but maybe not. The bottom line is autism and Down Syndrome are not the same thing. Autism has a much broader spectrum of potential severities and outcome measures. Beyond providing the information, science cannot say anything about whether a person should have a child that they “know” will be disabled. Is it more or less humane to abort a fetus at 3 months when you find out the little boy that you’re carrying has a Mecp2 deletion (causes Rett syndrome in girls), when he would have a very short and painful existence on this earth if he even survives long enough to be born? I know this too is an extreme example and not directly related to most cases of autism any more than Down Syndrome is, but in being true to the belief that science is not about making value judgments, I’m not sure that arguing against eugenics is an appropriate argument against searching for genetic causes. (So long as there is not an institutional system in place that mandates abortion in the case of mutation X,Y, or Z, which there is not even in the case of Down, just a moderate to strong societal tendency).

Alright, well I’m sorry that turned into a book and I hope all of that has made sense… I try really hard not to slip too much into professional jargon, but I know I fail a lot, so just ask me to rephrase if I was making no sense at some point. I also understand that my perspective is not the perspective of every researcher (personally, I am actively trying to understand and take the thoughts/concerns/desires of pro-neurodiversity parents and of autism self advocates into consideration in choosing what I plan to study and research… there may be more people doing this than you realize… they just don’t all comment on blogs). There is certainly a lot that is wrong about current practice in autism research/advocacy/treatment, and I’m sure it is even more frustrating to you, as a mother, than to me as a researcher, but I try to take solace in how far we’ve come from the days of the refrigerator mother hypothesis, or even the heavy metal poisoning hypothesis. I genuinely believe we are moving in the right direction and I like to think that having these kinds of conversations between parents, self-advocates, and researchers will only speed up that change in perspective. For instance, I’ve learned in the past few years just how desperately we need to spend more time studying adult populations to learn both more about outcome measures, and to learn what services they may need, and I advocate for increased funding of this every chance I get (as a scientist, I am acutely aware that funding is a zero-sum game, so that is saying something).

Anyway, thank you for taking the time to talk with me.

Best to you and Alex,

Christie

PS: You say that improving quality of life isn’t the goal of cure-driven research (and maybe we have a different definition of “cure-driven”), but I assure you that it is the goal in our lab… though admittedly “improving quality of life” is much more clear-cut in Rett Syndrome with all of it’s common comorbiddites, than it is in ASDs as a whole. … I’ll tell you more in a few months when our paper comes out. Keep in touch!